Choosing not to have surgery - Am I crazy?
I have Junctional Adeno EC. It's stage T3N0. I'm 60 and healthy and active with no additional morbidity risks. I'm currently in week five of a 6 week chemo/beamo treatment path. I have indicated to my team that I am not opposed to surgery but will forgo it and be surveiled in the event that testing post this phase of treatment comes back NED (No Evidence of Disease). If my condition changes from NED during the survellance period, I would then have a what they call a "salvage" surgery. It might be a little more difficult due to more scarring but doable by an experienced surgeon and facility. I'm told by my onc doc that a PET/CT will not be taken until a couple of months after the end of this first treatment phase. He and my radiologist have stated that the radiation treatments continue to effect tumor and cancers in general for two months or more after treatment and testing before 2 months could result in erroneous results (as in the full effects of the checmo/beamo have not been completed with a test taken too early). So here is my thesis...
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We all know that there are no gaurantees with trimodal treament, surgery alone or any other treatment for EC for that matter (including my own thoughts or hypothesis) but the medical community sets protocol to studies alone so let's look at that. Having said that, The Cross Study that most physicians and hospitals follow as Gold standard protocol was conducted to gauge the efficacy off surgery alone against the tri-modal approach (chemo/beamo AND surgery). The trimodal approach was found to be more productive in terms of outcomes. "Patients treated with neoadjuvant chemoradiotherapy followed by surgery had a 34% lower risk of death during follow-up". However we'll never know what the outcome would be for patients that had chemo/beamo and NO surgery because there will never be a study of that and there were only two patients in the Cross study that choose not to go through with the surgery. What happend to them? Searching the web I have found few patients who just refuse to have the surgery outright and clearly the medical community would never do a study by dividing up two groups of patients and not providing surgery for one group...it would just not happen at least here in the US. For the few patients that I have found who choose not to do the surgery, there is no recorded followup to assess what happens to them (other than their anecdotal reports) so not much to go by there because they fall outside the medical realm of standard of care and followup I guess. Interestingly the Cross study states "Complete remission in both the primary tumor and the lymph nodes (ypT0N0) was the best possible pathological outcome of chemoradiotherapy. The observed percentage of patients with a pathological complete response was (29%)". So 29% of the trimodal patients were NED? That means the chemo/beamo was 100% effective for 29% of their patients as demonstarted by pathological inspection after surgery? That's incredible. It would be interesteing to know what percentage of the trimodal patients that had a pathological complete response/NED (that 29%) ended up having a recurrence??? I ask this because of this observation...
" For surviving patients, the median follow-up was 45.4 months (range, 25.5 to 80.9). Of the 61 patients in the chemoradiotherapy–surgery group who underwent resection and died after having been discharged, 52 (85%) died from recurrent cancer and 9 (15%) from other causes (2 from sepsis, 2 from cardiac failure, 2 from respiratory insufficiency, 1 from kidney failure, 1 from a second primary tumor, and 1 after reconstructive surgery for a persistent postoperative neo-esophagotracheal fistula). Of the 83 patients in the surgery group who underwent resection and died after having been discharged, 78 (94%) died from recurrent cancer, 4 (5%) from other causes (2 from cardiac failure, 1 from respiratory failure, and 1 from a thromboembolic event), and 1 from an unknown cause (P=0.14)."
So this means that of the patients who died, nearly all of them in both groups had recurrence which means neither trimodal or surgey alone really prevented recurrence in their cases. If 52 of 168 trimodal patients died of recurrence, that means about 31% had a recurrence anyway and died despite having checmo/beamo and surgery. Were any of those patients the ones that were pathologically complete responders? Would be nice to know.
So even in the abscence of all these questions being answered, if I'm NED after this first phase my thoughts are that I would rather wait and see if there is recurrence or tumor growth (and I know without pathology of a complete resection you would never really know if the cancer is NED) as opposed to just jumping into the surgery with all the potential recovery issues and mortality risks associated WITH that surgery. I have researched this topic extensively and cannot find anyone or any thing that would lead me to believe there is a some huge risk in waiting if tested NED and being surveiled for changes. I'm told by some physicians that this topic is hotly debated and if you asked ten radiologists, 4-5 out of 10 would agree with my thesis. Again, I'm willing to have the surgery in the event this first phase fails to provide NED so that's not an issue. I know if I had surgery and was forever cancer free I would never regret it but no one can guarantee that. For the record I am far more optomistic about my survival chances in any event due to the incredible stories of all the survivors I've read on the web (nearly all of which had surgery). I am commited to lifestyle and diet changes that I believe can effect my outcome positively too. And beyond all the stats and studies I know this is a very personal choice. Any survivors out there that choose not to have surgery? Thoughts anyone?
Comments
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Current scan techniques are not that good
Cabobob,
I should start my comments by saying I am a seven year survivor of esophageal cancer and I have had surgery to remove my esophagus and part of my stomach. Surgery is difficult but survivable.
I think there may be two questionable assumptions in your analysis of the potential outcomes of surgery vs. no surgery post chemotherapy and radiation:
- The statistics are applicable to you as an individual
- Current scan techniques are very effective at detecting cancer in early stages
I would suggest to you, that neither of the above statements are true.
My personal experience was that I was having recurrent middle of the night acid reflux. I went to my PCP to get a prescription for a PPI to treat my symptoms. I was not having any of the “typical” symptoms of esophageal cancer. My PCP said “just to be safe let’s do an endoscopy”. He scheduled me for an endoscopy. The gastroenterologist doing the endoscopy said, “I see lots of irritation but nothing that looks like cancer, but just to be safe, I did some biopsies”. “We will call you with the results”. A week later I got a call from his office that said, “Mr. Adams we are sorry to tell you that your biopsies indicate esophageal adenocarcinoma”. So then began the series of scans and a second endoscopy using ultrasound to complete staging and a treatment plan. My medical team said “Good news Mr. Adams you are T2N0M0, effectively Stage 1 so we can go straight to surgery, you won’t need any chemotherapy or radiation”
So off I went to surgery. My sixth day after surgery in the hospital my surgeon came to me and said “Sorry Mr. Adams but the pathology from your surgery shows cancer cells in the lymph nodes outside the esophagus you are actually Stage 2B”. “You will need to have follow up chemotherapy after surgery”. So I had to complete six months of aggressive chemotherapy while attempting to recover from surgery. Much more difficult than before surgery!
The point of my long story is that, as far as medical technology has come, they are still “poking around in the dark” when it comes to detecting cancer and understanding how quickly it may spread. Your basic assumption is that if your post chemotherapy and radiation therapy come back “NED” you can have surveillance scans and if they detect a recurrence you can just go to surgery. Don’t confuse “No evidence of disease” with “Cancer free”. Based on my personal experience, I would suggest that if you do have a recurrence, by the time it is detected, it could very well be elsewhere in your body and you would be Stage 4 and surgery would no longer be an option.
I would also suggest that statistics are just observed averages of groups of people that were followed by the medical community that have no real applicability to your personal physiology.
This is a very aggressive cancer, and the survival statistics are not that great. I would suggest the more you can do to improve your chances of eradicating this cancer the better.
Just one guys opinion based on painful experience….
Best Regards,
Paul Adams
McCormick, South Carolina
DX 10/2009 T2N1M0 Stage IIB - Ivor Lewis Surgery 12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009
Cisplatin, Epirubicin, 5 FU - Seven Year Survivor0 -
Cabobob~Thoughts from a "T3N1M0" surgical survivor of 14 yrs!
An early Good morning to you “Cabobob”
Are we reading from the same New England Journal report? You’ve asked are you crazy? Do you want an honest answer? I’ll hold off on that, but I already have an answer on the tip of my tongue! Since you asked for “comments” might I make a few?
I’m not used to seeing the phrase “chemo/beamo”. Is that one and the same as chemo and radiation? In any event, is your diagnosis the same one that is most often termed, Adenocarcinoma at the Gastroesophageal junction?
You say your diagnosis is “T3N0”.
- This link: http://www.cancer.net/cancer-types/esophageal-cancer is very informative and is a trusted site.
The stages of Esophageal Cancer are outlined here:
“…Here are more details on each part of the TNM system for esophageal cancer:
Tumor (T)
Using the TNM system, the "T" plus a letter or number (0 to 4) is used to describe the tumor, including whether the cancer has grown into the wall of the esophagus or nearby tissue, and if so, how deep. Some stages are also divided into smaller groups that help describe the tumor in even more detail. Specific tumor stage information is listed below.
TX: The primary tumor cannot be evaluated.
T0: There is no cancer in the esophagus.
Tis: This is called carcinoma (cancer) in situ. Carcinoma in situ is very early cancer. Cancer cells are in only one small area of the top lining of the esophagus without any spread into the lining.
T1: There is a tumor in the lamina propria and the 2 inside layers of the esophagus called the submucosa. Cancer cells have spread into the lining of the esophagus.
T2: The tumor is in the third layer of the esophagus called the muscularis propria. Cancer cells have spread into but not through the muscle wall of the esophagus.
T3: The tumor is in the outer layer of the esophagus called the adventitia. Cancer cells have spread through the entire muscle wall of the esophagus into surrounding tissue.
T4: The tumor has spread outside the esophagus into areas around it. Cancer cells have spread to structures surrounding the esophagus, including the large blood vessel coming from the heart called the aorta, the windpipe, diaphragm, and the pleural lining of the lung.
Node (N)
The “N” in the TNM staging system stands for lymph nodes. In esophageal cancer, lymph nodes near the esophagus and in the chest are called regional lymph nodes. Lymph nodes in other parts of the body are called distant lymph nodes.
NX: The lymph nodes cannot be evaluated.
N0: The cancer was not found in any lymph nodes.
N1: The cancer has spread to 1 or 2 lymph nodes in the chest, near the tumor.
N2: The cancer has spread to 3 to 6 lymph nodes in the chest, near the tumor.
N3: The cancer has spread to 7 or more lymph nodes in the chest, near the tumor.
Metastasis (M)
The "M" in the TNM system indicates whether the cancer has spread to other parts of the body.
MX: Metastasis cannot be evaluated.
M0: The cancer has not spread to other parts of the body.
M1: The cancer has spread to another part of the body…”
Accordingly, your diagnosis of “T3” seems to be thus: Your cancer has penetrated ALL four walls of your Esophagus into surrounding tissue! The “N0” indicates that thus far it has not spread into the lymph nodes. You are blessed.
In my years of reading about Esophageal Cancer and my firsthand knowledge of it due to my own husband’s diagnosis of Esophageal Cancer, “T3N1M0”, his thoracic surgeon said he should have the surgery, even if the pre-op chemo of 5-FU and Carboplatin showed a complete removal of the cancers. The surgeon said that often microscopic cancer may still be present and not picked up by the scan. During surgery usually a minimum of 22 lymph nodes are tested by the pathologist for cancer that may not have been previously detected.
The “T3N1M0” diagnosis meant that all 4 walls of my husband’s Esophagus had been infiltrated with cancer. The “N1” category as noted above, meant that it had already begun to spread into the lymph node system and had affected 2 lymph nodes. The “M0” was a godsend category. It meant that the cancer had not yet made its way to another major organ, as it so often does with patients who are diagnosed with Esophageal Cancer! Many patients have symptoms of acid reflux and heartburn and fail to go to see a Gastroenterologist. And to the patient’s dismay, often the diagnosis when they finally consult one is that the Stage is already advanced to Stage IV.
My husband had 25 consecutive radiation treatments in addition to two 96-hour infusions of Carboplatin and 5-FU. Chemo has a residual effect of about 3 weeks, so a post-treatment PET/CT scan showed “complete eradication” of the cancers as previously noted. However, the doctor said, “You need to have an Esophagectomy even if all the pre-op work shows complete eradication PERIOD.” He explained that surgery is best performed as early as possible after the neo-adjuvant treatments are complete because significant scar tissue can build up making the surgery more difficult, the longer the wait.
And so my husband was diagnosed in November of 2002. He had the neo-adjuvant treatment here at home locally, and then traveled to the University of Pittsburgh Medical Center where he had the Ivor Lewis Minimally Invasive Esophagectomy May 17, 2003. Dr. James D. Luketich pioneered the MIE procedure in the mid-90s and today it is the main type of surgery performed at UPMC. It is totally laparoscopic with less hospital stay, less blood loss, less morbidity, etc. and band-aid size cuts.
My husband had no complications, was in and out of the hospital in 5 days, and downtown shopping with me on Day 8 from surgery. Now this is not always the normal, but it is our story of success. And to this day, we are rejoicing that we made the best choice and went with the surgeon’s wise advice! My husband, William, is now celebrating his 14th year of survival with currently NED (No evidence of disease.)
So as I scan this NEMJ article, I come away with the conclusion that those who had the tri-modal treatment survived the longest.
The last paragraph in this article reads thus: “In conclusion, preoperative chemoradiotherapy (five courses of carboplatin and paclitaxel, with 41.4 Gy of concurrent radiotherapy) is safe and LEADS TO A SIGNIFICANT INCREASE IN OVERALL SURVIVAL AMONG PATIENTS WITH ADENOCARCINOMA OR SQUAMOUS-CELL CARCINOMA OF THE ESOPHAGUS OR ESOPHAGOGASTRIC JUNCTION.”
Seems to me that the conclusion is that those who had the tri-modal treatment of neo-adjuvant chemo and radiation followed by an Esophagectomy led to a “SIGNIFICANT” increase in “overall” survival! Isn’t that what we all wish for?
Might I pose some questions?
You say, You’re now in a 5 to 6 week treatment period. If it is shown to be successful and there is no evidence of disease, you are going to WAIT and surveil the situation for a couple of months. You mention a “salvage surgery” if you find the cancer has returned, as I understand it.
(“ If my condition changes from NED during the survellance period, I would then have a what they call a "salvage" surgery.”)
Question 1: WHAT IF your treatment period did result in a NED result? What’s to say that there were not still microscopic cancers not detectable on the scan?
Question 2: WHAT IF in that 2-month wait/surveillance period, those same tumors surfaced and metastasized to another major organ? When cancer has advanced to another major organ, then surgery is not the usual option. At that point usually only “palliative” measures are taken, but not an actual Esophagectomy. I’m not sure of what type of “salvage surgery” you’re speaking of. What if conditions have worsened in that surveillance period to where there are no surgical options?
Question 3: Have you had a SECOND OPINION at a major medical hospital where Esophagectomies are one of their specialties?
My final comment: If I were you, and know what I know now, I would not wait 2 months after the treatment period to see if the cancer has returned. It might have indeed “returned with a vengeance” which it can, and even a “so-called salvage surgery” would not be possible. Personally, that’s a gamble I would not take. I'll stop short of saying "You're crazy. That's a question to be answered by someone "above my pay grade." But perhaps you are just woefully uninformed!"
Loretta Marshall, wife of William, EC Stage “T3N1M0), now in his 14th year of survival after surgery and so far with no evidence of disease. That’s a miracle.
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Videos relative to Esophageal Cancer and surgical procedures which you should find informative.
1.
https://www.youtube.com/watch?v=FvgEaDVCKfAIllustrative video explaining Esophageal Cancer
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2. http://www.upmcphysicianresources.com/cme-course/minimally-invasive-esophagectomy
A lecture by Dr. James D. Luketich
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3. http://www.upmcphysicianresources.com/cme-course/minimally-invasive-esophagectomy/item/2
A second lecture by another UPMC surgeon.
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4.
https://www.youtube.com/watch?v=hx4hS21AbuI“This is a noted Thoracic Surgeon, Dr. Ninh Nguyen” who served with Dr. Luketich in the mid-90s when the Minimally Invasive Ivor Lewis Esophagectomy was first pioneered. He is a gifted surgeon and has written extensively articles that have been published in medical journals on the subject of Esophageal cancer as has Dr. Luketich.
“Uploaded on May 4, 2011
DUE TO THE GRAPHIC NATURE OF THIS VIDEO, VIEWER DISCRETION IS ADVISED.
Minimally Invasive Esophagectomy featuring Ninh T. Nguyen, MD, Professor of Surgery Chief, Division of Gastrointestinal Surgery, University of California, Irvine Medical Center (SDMK13CD0800259)”______________________________________________________
5.
https://www.youtube.com/watch?v=s3UmyJX-7nMThere is another type of surgery known as Transhiatal Esophagectomy (THE). It is not as minimally invasive as the surgery Dr. Luketich performs, the (MIE) but it is better than the “open” Esophagectomy known as the Transthoracic Esophagectomy or (TTE)
“Published on Jul 26, 2013
James Luketich, MD, interviews Mark Orringer, MD, who discusses the procedure that Dr. Orringer, Univ. of Michigan, pioneered: the Transhiatal esophagectomy. He reviews the key steps in the procedure to make this a successful operation.”
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6.
https://www.youtube.com/watch?v=vkxE7ABaq3Y&list=QL&feature=BF“A surgery you definitely do NOT want. But he is a noted Russian surgery.” This is an “OPEN” surgery as you can see! It is filmed in 2009. I'm sure our facilities here in the states are not this "primitive" but none the less, it is what it is--OPEN surgery.
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Hello Cabobob
Hello Cabobob,
Sorry to see you here, but hopefully you turn into one of this site's success stories.
You seem to be very focused on the math of your situation, but I want to suggest to you that the statistics you are using are not your own. You are a statistic of one and you only get one life that will continue or end based on your decisions. You don't get to average out 61 chances for your own case. I'd suggest to you that if you are relatively young and otherwise healthy, you want to take the most aggressive possible approach to your treatment. This SOB comes back. Recurrences are simply what happens far too frequently. Take whatever measures you can to reduce the risk of recurrence. A recurrence is very much less survivable than the original episode, so you really want to not have it come back.
Personally, I started out as stage III in 2008. I was relatively young and strong, so we went for the most aggressive treatment we could. I had chemo/radiation, then surgery (yes, it is major big deal surgery), then a bonus round of chemo just to bayonnette the cancer corpses. At the surgery, it was found that I had a complete response to the initial chemo/radiation. We still did the bonus (much stronger) chemo. In 2011 I still had a recurrence in a lung. There was an approximately 0% chance of survival from that. This is an example of what I mean by the idea of being a statistic of one. All I was concerned about was my own survival, not the odds/statistics. I'm testing clean 5+ years after being given a few months to live.
It's been a long, hellacious trip, but I'm not sorry for any of the decisions we made along the way. If I was starting all over, even knowing what I know now, I'd still make the same choices and be as aggressive as possible. You only get one chance, you don't get to average out 61 other people's chances. The only statistic that matters to you is your own life.
Best wishes,
Ed
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This is an aggressive beast
Hello Cabobob,
I can't give advice, only share my decisions and outcomes.
Last July, 2015, I was 75 years old and had just had a routine lower endoscopy which went well. In discussion with the gastroenterologist afterwards I described some other symptoms which led him to immediately suggest an upper endoscopy. The result of that was that I had been experiencing what he called “Silent GERD” and had developed Barrett’s Esophagus which he biopsied. A week or so later the results came back that this contained cancer cells. I asked him how aggressive this was. The answer “very!”
If only my dentist would have suggested an upper endoscopy a year or more earlier! The symptom I had was serious wisdom tooth decay. Instead I got heavy fluoridated toothpaste + a couple of fillings.
I am fortunate that I live close to the Medical University of South Carolina and they have some wonderful physicians there. A quick repeat test at MUSC involving sonar indicated that the cancer was deep enough that I was not a candidate for the easiest treatment…floating off a layer or two of cells with saline. It turned out that it was T3N1 and probably M0. Still it appeared to be relatively encapsulated.
As others have said, there is a statistics of this stuff. I have been doing statistical stuff all my life since I am a scientist. However, I am not a statistical universe and I didn’t want to be part of the group that doesn’t succeed. I elected to have the Ivor Lewis surgery immediately which I did at the end of August. The surgeon performs a significant number of these procedures each year. We decided to have surgery first and do the radiation and chemo second. No fooling around with aggressive stuff. A cell starts to migrate and blooey...there you go.
I wish I could say that things went well. They didn’t. Within three days of returning home I experienced a collapsed right lung due to fluid buildup. Back to the hospital in an ambulance for the insertion of drains and some suction to eliminate the fluid. The amount removed was measured in liters. Multiple!
After going home again a week later my surgeon was unhappy with the CT scan results and my progress. I had acquired an infection. After struggling with that via antibiotics for a week or two he recommended another surgery to decorticate my lung (and diaphram as it turned out) and remove the infection directly which was done. All in all I had been hospitalized for 6 weeks.
The surgery removed two-thirds of the esophagus plus part of the stomach plus some lymph nodes. One lymph node had cancer in it. The mdeical oncologist suggested that was very good news as cancer cells rarely jump a large number of lymph nodes.
Following surgery I experienced a numbness along the cartilage that encapsulates the front of the ribs. There is no doubt that the Ivor Lewis surgery with rib spreaders is the cause. This has gradually dissipated and now, about 15 months afterwards it is receding.
Oh, and the radiation oncologist said he wouldn’t know where to aim. The cancer was all gone as far as he was concerned. The medical oncologist said that there was no point to chemo.
Oh, and now I have an incisional hernia which is to be repaired next month. It will involve another couple days in the hospital for observation.
I guess you could say that I probably define the meaning of the word outlier when it comes to this particular experience. I understand your reluctance to take it on.
Today, 15 months later, the CT scans all show good results. No evidence of disease!
So, would I do it again? Absolutely. The cancer appears to be gone. I am feeling better and better. Do I like the lifestyle, sleeping on an angle? No. However, my confidence is now high that I no longer have that disease.
I wish you well in your decision.
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Surgery or no surgery
Hi Cabobob,
I understand your concerns. I faced those same questions 5 years ago. I was diagnosed with esophageal adenocarcinoma T2N1M0 Stage IIB when I was 61 years old. Like you, I had no other health issues. My treatment plan consisted of 25 radiation treatments and 7 infusions of Paclitaxel and Carboplatin followed by Ivor Lewis surgery. My surgical biopsies showed no evidence of disease, so I didn't have any post-surgery chemo. After my chemo and radiation treatments were completed, I also debated whether or not I should proceed with the surgery because my post-treatment scans showed no evidence of disease and I kept hearing how the surgery was "life-changing." After researching all the options and stressing myself out for a couple days, I finally decided that the best way to beat this disease was to do everything I possibly could do to increase my chances of long term survival. 5 years later, I don't regret my decision one bit. And, other than having to sleep in an elevated position and giving up my former love of spicy foods, my life hasn't really changed at all. I still enjoy an occasional taco, burrito, and pizza. I just have to leave off the hot sauce and jalapenos. As others have said, this is major surgery and it takes a long time to recover, but it is definitely doable.
A friend of mine told me about a co-worker of his that was diagnosed with esophageal cancer around the same time I was diagnosed. The co-worker opted for a clinical trial and since his post-trial scans showed no evidence of disease, he chose not to have the surgery. A year later, he suffered a recurrence and died.
Your decision is ultimately up to you, but like others have said on this board, if I had to do it all over again, I wouldn't change a thing. If you would like to learn more about my experience, feel free to message me and I will give you my contact information. I know when I was going through treatment, it was helpful to talk to persons that had been through it before.
Good luck in whichever path you choose.
Steve
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surgery experience
My father was originally not a candidate for surgery due to advanced age and poor health. He was turned down by more than one surgeon but he wanted surgery to get best chances. He tolerated the chemo and radiation so well that he was later approved for surgery. It was not an easy surgery but he had no complications at 80 years old with a host of pre-existing health problems. He can eat anything he wants now just smaller portions. we recently added digestive enzymes to his daily routine and that has helped significantly with indigestion. about 18 months after surgery they found one tiny distant recurrence in lung (1.5 cm) on a routine scan. he was recently treated with cyber knife radation. no side effects or discomfort from that. CT results today show significant shrinkage of the tumor and no sign of any new tumors. its been over two years since original diagnosis now and he is doing well with very good quality of life. no regrets.
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Husband is T3N0
Thank you for explaining your thoughts. My husband, age 71 also has EG junction cancer. He has similar ideas. But its much too early to decide. His cancer was diagnosed last month, size 5 cm. Today he had esophageal ultrasound. Depth was T3 but the doctor found NO enlarged lymph nodes. PET-CT also negative for distant metastases. Chemo/radiation begins on Monday. Husband has trouble swallowing solid foods. He drinks protein smoothies, LOVES egg nog and milk. He eats soft foods like deviled eggs and cheese. GI doctor (today) suggested stent placement if the going gets rough (due to initial swelling) when chemo/radation begins. I am cooking and coaxing the best I can, to get him above 2,000 calories per day. We are very glad treatment is starting soon. Waiting for test results is nervewracking. Please continue to write. Your posts are very helpful to newbies.
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"KB"-Stage 3 EC is advanced & requires surgery as part of trtmnt
Hello “KB”
You and I have spoken briefly earlier in December. Your husband may be entertaining the idea, like a few others, but only a few I might say, thinking that if the chemo/radiation treatments show “no evidence of cancer” after the treatments, then there will be “no need” for an esophagectomy. May I tell you frankly, he is “playing Russian roulette” with his life, and yours too. Having monitored this site for years, I can tell you the same thing our surgeons told us, “even if the pre-op chemo shows total eradication of the tumors in the Esophagus, surgery is still NECESSARY. This for the reasons I have outlined above already in a previous response to “Cabobob.”
If your husband knew what we “survivors” knew, he would be thanking God that he is a potential candidate for an esophagectomy. And may I say as always, please get a SECOND OPINION from a major hospital that has as one of their SPECIALTIES, THE IVOR LEWIS MINIMALLY INVASIVE ESOPHAGECTOMY (MIE).
And another piece of advice, during my years here, stents do not have a “good reputation” for the most of our fellow patients. I know one daughter who said her dad never had another well day after the stent was inserted. He had a back ache and a constant cough. I would not advise a stent. Often during the radiation designed to shrink the tumor, it will cause the stent to migrate to the stomach and then it has to be surgically removed. At other times the stent, depending on the type can actually become enmeshed with the tumor itself, and be impossible to remove. At other times it has been shown to cause the food to lodge at the base of the esophagus and hinder the food from passing into the stomach. So knowing what I know from reading behind others and listening to their complaints, plus doing research, a stent would be a “non-starter”
if this were my husband.Futhermore, a “J” tube would be the best guarantee for successful feeding during this time of chemotherapy/radiation. This is surgically placed into the second section of the small intestine known as the “Jejunum”. If a medical team suggests putting in a G-tube that goes into the stomach for feeding, that will have to be “removed” prior to surgery. One of the best surgeons that I know about says in his excellent videos, he personally does NOT LIKE a G-tube because it has to be removed a couple of days prior to surgery. As he uses the stomach for a new “gastric tube” he prefers it not be compromised previously with a gastric tube. I suggest you view some of the videos in "Cabobob's" letter I wrote to him.
You haven’t asked a lot of questions, but we know where you are in this process, and we know of your anxieties. They are common to all. We here, care deeply, that our brothers and sisters get the very best care, and avoid the many pitfalls that can be encountered by not being truly informed about the “do’s and don’ts” of this major surgery. And as “ED” always says, this is not an operation that can be done at any corner hospital. And may I add that all hospitals do not rate the same when it comes to their skills in performing Esophagectomies. So I say, a word to the wise is sufficient. Do your homework and please dissuade your husband of any ideas of just bypassing the surgery. Surely his surgeons have already advised him of this. If not, they should have. There are oh so many stage IVs who come here who would “give an arm or a leg” to be able to have the surgery, but cannot because the cancer has already marched on to one or more other organs. Those IVs only have the possibility of palliative treatments, but can never entertain the hope of being made “whole” again.
There are successes and I know it is your prayer, as is ours, that every possible measure will be taken to insure that this cancer is stopped in its tracks before it can advance to another organ. The esophagectomy gives you and your husband the best chance of a happier NEW year and many more to come. May God guide and bless you in all the days that lie ahead.
Sincerely, Loretta (William’s wife)
(William DX 11-02 w/EC Stage III (T3N1M0), II opinion, pre-op chemo/radiation Carboplatin/5-FU plus radiation, then surgery May 17, 2003, at the University of Pittsburgh Medical Ctr. (UPMC) by thoracic surgeon, Dr. James D. Luketich, who pioneered the minimally invasive esophagectomy (totally laparoscopic) in the mid 90’s. It’s not a “new kid on the block”—it is the preferred surgery for the quickest recovery (barring complications of course.)
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Surgery then metastisised. ...but worth it
Hello Cabobob....I won't repeat any of the valid arguments for surgery so eloquently made by the others above. My husband went through the chemo/radiation and surgery Nov 2016. Not uneventful and some complications but recovery after he came home was good. A CT done for the purposes of entering an immunotherapy trial in Feb 2017 revealed significant liver metastises that were not visible in November. The spread and growth was that fast. Granted he had not quite achieved a complete response from the chemo/radiation.....but so close. We were devastated of course. He had 6 months of chemo that worked well but never achieved NED status. Then maintenance chemo that did not work. He is now 3 months into immunotherapy and we find out next week if this is working. We know what we are dealing with here and how the story ends. However we have talked often about how lucky he was to have been eligible for the surgery. So far he has been symptom free from the cancer (though he was knocked around by the chemo ). We have had some wonderful times during this year...untroubled by any esophageal issues. We believe that without the surgery he would very likely have been in real trouble by now with swallowing issues. My great hope is that he never experiences a recurrence at the site of the original tumour / surgery. The surgery did not provide a cure for him, but has allowed him to participate fully in the events and celebrations that are such an important part of our family life. He eats and drinks whatever he wants. In that respect he is so lucky. I wish you well whatever you decide. ...but please give yourself the best chance of the best life for as long as possible. Janine
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Greetings / What did you decide?
Hi CaboBob,
I started my esophageal cancer journey in Sept 2014 when it was first diagnosed. I had chemo-radiation, then decided to go the naturopathic route. I did that for 3 years and through some interesting circumstances I finally submitted to the surgery on March 14, 2017. I'm now 10 months out from that surgery. Let me know what you decided and why, if you would. I'm interested because I just wrote my experience in a book to help others both process the operation as well as survive overall. Let me know if you want info on the book. You can write me at cancereclipse@gmail.com
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Please let me know how the immuno is workingZzdunne said:Surgery then metastisised. ...but worth it
Hello Cabobob....I won't repeat any of the valid arguments for surgery so eloquently made by the others above. My husband went through the chemo/radiation and surgery Nov 2016. Not uneventful and some complications but recovery after he came home was good. A CT done for the purposes of entering an immunotherapy trial in Feb 2017 revealed significant liver metastises that were not visible in November. The spread and growth was that fast. Granted he had not quite achieved a complete response from the chemo/radiation.....but so close. We were devastated of course. He had 6 months of chemo that worked well but never achieved NED status. Then maintenance chemo that did not work. He is now 3 months into immunotherapy and we find out next week if this is working. We know what we are dealing with here and how the story ends. However we have talked often about how lucky he was to have been eligible for the surgery. So far he has been symptom free from the cancer (though he was knocked around by the chemo ). We have had some wonderful times during this year...untroubled by any esophageal issues. We believe that without the surgery he would very likely have been in real trouble by now with swallowing issues. My great hope is that he never experiences a recurrence at the site of the original tumour / surgery. The surgery did not provide a cure for him, but has allowed him to participate fully in the events and celebrations that are such an important part of our family life. He eats and drinks whatever he wants. In that respect he is so lucky. I wish you well whatever you decide. ...but please give yourself the best chance of the best life for as long as possible. Janine
Hi Janine,
I had the surgery as well, and presently have a friend in Stage 4 without the surgery who's in chemo and will go into immunotherapy. Would you mind sending me an email once you find out how it's working for your husband? Thanks. cancereclipse@gmail.com
Dave
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You Are NOT Crazy
I am 56 years old powerlifter/bodybuilder who was struck with this disease with zero symptoms. Furthermore, I am professionally employed as a Healthcare Fraud Investigator. I just finished five (5) weeks of chemotherapy and radiation. I have lost approximately 45 pounds of my precious muscle that took me 43 years to build. I am still in a state of shock.
My last solid meal was on or about March 2 and the only nutrients supplied was from that nasty feeding tube. I was unable to swallow my spit. Amazingly, I begin to eat and drink (without restrictions) again approximately two (2) weeks ago.
I'm a big quality of life guy. I had rather have 2 years at full speed than 20 with the potential life long devastating side effects brought on by the surgery. Yes, I am a mathematical numbers person and the odds for quality of life are not in your favor, PERIOD if you elect to have the surgery. I understand that a couple of you took the time to respond with your success stories and I am so happy that it worked out for you but what about the hundreds (likely thousands) that it didn't work for? They would be unrepresented in this forum because they are either deceased or to sick to care.
Each individual has to conduct as much research as possible and then weigh the cost/benefit factor and make the best decision you can make and stick to it.
I am traveling to MD Anderson to get a second opinion before rolling my dice. At this point I am leaning towards no surgery.
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My husband also declinedsiutis12 said:You Are NOT Crazy
I am 56 years old powerlifter/bodybuilder who was struck with this disease with zero symptoms. Furthermore, I am professionally employed as a Healthcare Fraud Investigator. I just finished five (5) weeks of chemotherapy and radiation. I have lost approximately 45 pounds of my precious muscle that took me 43 years to build. I am still in a state of shock.
My last solid meal was on or about March 2 and the only nutrients supplied was from that nasty feeding tube. I was unable to swallow my spit. Amazingly, I begin to eat and drink (without restrictions) again approximately two (2) weeks ago.
I'm a big quality of life guy. I had rather have 2 years at full speed than 20 with the potential life long devastating side effects brought on by the surgery. Yes, I am a mathematical numbers person and the odds for quality of life are not in your favor, PERIOD if you elect to have the surgery. I understand that a couple of you took the time to respond with your success stories and I am so happy that it worked out for you but what about the hundreds (likely thousands) that it didn't work for? They would be unrepresented in this forum because they are either deceased or to sick to care.
Each individual has to conduct as much research as possible and then weigh the cost/benefit factor and make the best decision you can make and stick to it.
I am traveling to MD Anderson to get a second opinion before rolling my dice. At this point I am leaning towards no surgery.
My husband also declined surgery. 2 weeks ago, his PET scan was clear about 11 weeks post chemo/radiation. He will get another endoscopy in a couple weeks, then scans (CT or PET) every 3 months for the next 2 years, then every 6 months after that. If cancer recurs, then targeted HER2+ therapy will be an option. Meanwhile, he is getting quite strong, exercising and eating well. If there's future battle to be done, he will be in better shape than before. My husband was diagnosed Dec 2017 with 5 cm mass at the GE junction. He was staged T3N0M0 (Stage 2a), then treated with 6 carbo/taxol infusions and 29 radiation doses. This treatment was very difficult. My husband got severe esophagitus then ended up in the hospital radiation pneumonitis. He was on mechanical ventilation 5 days, hospitalized 10 days total, then skilled nursing facility for 2 weeks. He came home on St. Patrick's day (March 17). Today, he is almost back to normal but still recovering muscle strength. He eats anything he wants. We are keeping fingers crossed.
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Non surgical candidatesiutis12 said:Congratulations
I love to hear stories like this. Good job for refusing surgery and taking a watchful waiting approach. Please keep me updated and I will do the same. My tumor was so large they have yet to stage me. Since it responded to chemotherapy and radiation and I can now eat as before, they should be able to perform an endoscopy and ultrasound for a complete staging.
Take care.
Update, metabolically speaking my once very large esophageal tumor went from 10.9 to a 4.2 on the PET. Consequently I flatly refused to submit to the barbaric surgery guaranteed only to give you life London side effects and no promise for a better survival rate. I told my surgeon to pull out my feeding tube (happiest day of my life) and the mediport. My medical oncologist opined that I had six months to live last Tuesday. I had an endoscopy on Thursday. The tumor was not located. The esophagus is thicker where the tumor once was . The biopsy report will be ready on Tuesday. My radiation oncologist said that this complete response should give me 2-3 years and NOT 6 months. We are taking a watchful waiting approach.
This disease ruined my life. Previously I possesse the energy levels of a teenager and the body of a 30 year old. I was a competitive powerlifter and bodybuilder. I did not have GERD, acid reflux. Nothing unclean went in my body. I have lost 35 pounds of my precious muscle mass that took me 43 years to build. My energy levels resembles a 90 year old man and my appearance follows suit.
I was professionally employed as a Healthcare Fraud Investigator. I have been off work several months and will never go back to the job I left. I am not physically or mentally able do to do it.
I am also a non surgical candidate, diagnosed Stage 4 (T3, N2, M?) August of 2018. They still can not clearly tell whether I had a liver metastasis or not. I had two esophageal tumors, and did have Mets to 6 different lymph node sites, all have completely resolved at this point, according to most recent CT and pet scans.
I don't think the Original poster is crazy, though I am curious about his outcome and whereabouts.
Be thankful at this point that you have a choice, Mayo said initially that I am a non surgical candidate, and at this point I have not bothered with a second opinion. They would set up a consult for aggressive chemo/radiation, but then again quality of life comes into play. And I would have to leave to study trial that has worked so well for me this far. At this point why mess with something that has given me a complete response?
Whatever decision you choose is the right decision. There are always "what ifs" after you have already made those choices. I agree with your here, like me you are younger than most and relatively healthy yet, which increases your ability to fight this monster no matter what. And we are not hearing from the thousands of people alone who die in this country even after having the surgery.
Statistically I should not be typing this right now. If I made the career change I had planned last August and put the symptoms off a few more months, theres a good chance I would not be writing this right now. By the grace of God, here I am.
One thing my oncologist did tell me, is that with most cancers if you can remain NED for 5 to ideally 7 years, there is a good chance you have beat it. Any recurrence puts you back to square 1.
There is a big difference between complete metabolic response and complete pathologic response, which is extremely hard to determine with an aggressive cancer like this.
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Congratulationskbdarnall said:My husband also declined
My husband also declined surgery. 2 weeks ago, his PET scan was clear about 11 weeks post chemo/radiation. He will get another endoscopy in a couple weeks, then scans (CT or PET) every 3 months for the next 2 years, then every 6 months after that. If cancer recurs, then targeted HER2+ therapy will be an option. Meanwhile, he is getting quite strong, exercising and eating well. If there's future battle to be done, he will be in better shape than before. My husband was diagnosed Dec 2017 with 5 cm mass at the GE junction. He was staged T3N0M0 (Stage 2a), then treated with 6 carbo/taxol infusions and 29 radiation doses. This treatment was very difficult. My husband got severe esophagitus then ended up in the hospital radiation pneumonitis. He was on mechanical ventilation 5 days, hospitalized 10 days total, then skilled nursing facility for 2 weeks. He came home on St. Patrick's day (March 17). Today, he is almost back to normal but still recovering muscle strength. He eats anything he wants. We are keeping fingers crossed.
I love to hear stories like this. Good job for refusing surgery and taking a watchful waiting approach. Please keep me updated and I will do the same. My tumor was so large they have yet to stage me. Since it responded to chemotherapy and radiation and I can now eat as before, they should be able to perform an endoscopy and ultrasound for a complete staging.
Take care.
Update, metabolically speaking my once very large esophageal tumor went from 10.9 to a 4.2 on the PET. Consequently I flatly refused to submit to the barbaric surgery guaranteed only to give you life London side effects and no promise for a better survival rate. I told my surgeon to pull out my feeding tube (happiest day of my life) and the mediport. My medical oncologist opined that I had six months to live last Tuesday. I had an endoscopy on Thursday. The tumor was not located. The esophagus is thicker where the tumor once was . The biopsy report will be ready on Tuesday. My radiation oncologist said that this complete response should give me 2-3 years and NOT 6 months. We are taking a watchful waiting approach.
This disease ruined my life. Previously I possesse the energy levels of a teenager and the body of a 30 year old. I was a competitive powerlifter and bodybuilder. I did not have GERD, acid reflux. Nothing unclean went in my body. I have lost 35 pounds of my precious muscle mass that took me 43 years to build. My energy levels resembles a 90 year old man and my appearance follows suit.
I was professionally employed as a Healthcare Fraud Investigator. I have been off work several months and will never go back to the job I left. I am not physically or mentally able do to do it.
0
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